Fatigue

[sip1]

How does endo fatigue affect you?

[gwen80]

How do you mean sip? What it feels like or work and quality of life?

[sip1 in reply to gwen80]

Both I guess My consultant told me that endometreosis didn't cause fatigue, which frankly shocked me having read so much about endo fatigue online!

[gwen80 in reply to sip1]

Sorry, I've been meaning to reply to you. It seems that the acceptance of fatigue as a symptom is quite a recent thing. I think I confused my GP the other week with the endo-fatigue link.

My fatigue is mostly cyclical. I struggle to wake up in the morning. I feel like I could sleep forever. At work (I'm desk-based) my eyes are bloodshot in the afternoon and really sore. By the time I get home I can hardly string a sentence together. I do quite a lot of driving and there are times I'm not fit to drive and have to delay my journey. The brain fog makes work difficult. I feel like there are issues I can deal with without a problem at times, but with the fatigue its like my brain is trying to think through cotton wool.

Gx

[Starry]

It kept getting worse steadily. At first i felt fluey. Then it evolved that I slept all weekend to get over work but never really recovered. Then I had to cut my work down to 4 days. Then 3 weeks ago I got signed off with exhaustion.

It is my worst symptom by far. It's what swung the balance to convince me to have surgery as it is 9 months since diagnosis and I have no life left.

I go into excision surgery tomorrow and pray it is successful in reducing the fatigue so I can get my life back.

[sip1 in reply to Starry]

I really feel for you Hope the surgery goes well and things start to look up. I'm having to consider surgery myself, but I'm too scared to go ahead with it at the moment.

[Starry in reply to sip1]

I was petrified and resisted it strongly for months. It is a personal journey to reach the point of being ready to take that step and being confident it is right for you. And of course after trying medical options first. X x x pm me if u want, but may be a tad slow to reply.

[sip1 in reply to Starry]

How did the surgery go?

I think what frightens me about surgery is the down regulation to start with! But also pain afterwards and then the possibility it could come back, or I end up with a different pain, or worse something goes wrong. Right now, I'm just too afraid. I've heard so many times that for many women - if it works, it is only for a short time.

[Starry in reply to sip1]

Hi

I am doing remarkably well. The procedure was meant to be 2 hours and became 4 plus a hour in recovery. Apparently I was as bad as could be and still avoid a resection. They worked wonders. I had an RV nodule which was larger and deeper than expected. I had some bowel shaved and 4 cm of my vagina had to be removed due to damage from endo, which is the only unexpected thing. They also excised endo from bladder and peritoneum above my ovaries. I didn't agree to a hysterectomy. I am recovering well have.no complications with bladder or bowel so far touch wood and feeling calmer than in ages. I am glad I did it as my endo was still active ( and it appears more aggressive) so if I had left it I would likely have ended up not being able to escape a bowel resection. People are very scared of stoma and resection but they are very rare. Tbh I was sicker after my diagnostic lap than I was after this. I would say if it's bowel endo better to operate sooner and need less done. RV endo is a different type of endo which tends to be resistant to hormone treatment.

[JackieBo in reply to Starry]

I'd also love to hear about how things are going for you now that you took the excision plunge. I hope you're resting comfortably and that you start to feel better afterward!

Would you mind sharing details of what was done in your surgery? I've finally got my appt with an Edno specialist in early August so I'd love to get as much info as I can from women as to what has worked for them.

Best wishes, Starry! ❤️

[Starry in reply to JackieBo]

. I had an RV nodule which was larger and deeper than expected. I had some bowel shaved and 4 cm of my vagina had to be removed due to damage from endo, which is the only unexpected thing. They also excised endo from bladder and peritoneum above both my ovaries. I didn't go for hysterectomy or oopherectomy.

[staceymacg]

I have terrible fatigue.

I really struggle to get up in the morning and most nights I sleep for 10-14 hours.

My job is desk based thankfully but most days I find myself really struggling to keep my eyes open and by the time my day is done my eyes are bloodshot and sore.

I really struggle with daily life due to fatigue. Simple things like walking to the shops exhaust me.

[Sara-JaneF]

Oh Lord! My limbs feel heavy, it is a battle to keep my eyes open. Sometimes I drop things and/or my limbs just flop like suddenly too heavy to hold.

I work with special needs children so as you can imagine I do need to be rather alert. It is getting me into all sorts of predicaments. I am often fighting to stay awake whilst engaging with students.